Time to recharge

MS is as MS does. It drains your energy levels, your thinking goes haywire over the silliest things and it well… it simply plays tricks on you.

Only last week I had my right arm swing all over my bedside table, but not where it had to be. Thankfully I was alone, in my bed and away from people. Having court cases because of accidentally thumping people in the face on the street is not what I envisage my near future to be.

So there went my right arm, up, down, left, right… just nowhere near my nasal spray. After strongly willing my arm to rest – imagine me staring angrily at my arm – it slowly did what it was supposed to do: seek nasal passages and shoot Nasonex in it. As intelligent readers you probably get the idea so I will not go into intimate details on what my nasal passages look like.

After the arm doing a circus act on me, it made me think “Oh no, not another relapse!” Eight years after my MS diagnosis, every new symptom still makes me apprehensive. After all, multiple sclerosis is not an easy ride. It is like driving along Highway 66 on a one-wheeled motorcycle, it has a terrible mind of its own.

Once again so, ‘new and/or long gone symptom’ linked itself to the word ‘relapse.’ And yes… all those people who have been telling me to rest the last few weeks… those people might actually be telling the truth. Time to recharge, Billie. You should relax a bit more, Billie. Will you just sit down and let me do it, Billie!

Billie’s undeniable truth is that she thinks that summer should stop happening. As right now. This minute. Next year, the following year and right until the end of the decade. I long to wear my tall Dr Martens boots again, but not only that, my winter coat, leather gloves and anything in between. Not because I am alternative to a tee, but because my MS symptoms are just completely out of whack from May to September. In wintertime, when I feel too warm, I deconstruct what I am wearing layer by layer. In summertime… I am quite sure you also get that idea.

I am therefore going on a self-imposed sabbatical in my bedroom. Alone. Finding a balance between do/don’t do is hard, seeking balance with MS is often made worse by the smallest of things that have the power to set of infections, severe fatigue and other unsavoury symptoms. Recharging energy levels with MS is hard, but nevertheless I am going to try and do a stellar job of reinvigorating myself. Alone. If not, help from my GP and/or neurologist might be needed in the form of steroid treatment.

By now I should have mastered my body’s wisdom. Being chatty and cheery a few hours is energy sapping. It may sound weird to you, but often I have to refrain myself from being too happy-go-lucky. I am happy, absolutely, I just need the ‘go-lucky’ part to run a bit slower. A bit less noisy also. And I need to rein in too much sunshine, staying up much too late and try living with coffee. Once I do this, I am back on the road of replenishing myself.

Please don’t take me for a weak child though, I believe inner strength is present at all times. I am happy about what I’ve accomplished in my time in Ireland, and in my life before moving to this island of saints and scholars. Multiple sclerosis seemed a drama at first but it now has me leading a fulfilled life and more in tune. Nietzsche once said ‘What doesn’t break me, makes me stronger’ and I live by that rule.

I simply need to learn not to invest too much in things I cannot possibly change on my own. Accept help more often and not be afraid to delegate something. Be meditative and seek isolation to escape stress. Living with stress increases MS symptoms, so finding a balance between regrouping my thoughts and trying to avoid neuropathic pains is a must.

Stepping back and focusing on myself is not a selfish act, it is a way of dealing with issues I should not be dealing with. I simply cannot afford drowning myself in trying to help people who refuse to be helped (oh, the irony!), or I need to listen to what my body is telling me. Once I’ve learned to do this, bouts of intense MS fatigue should become less and less insurmountable.

But for now, retiring to my bedroom with a book, laptop, two hours of television a day and rest, just like I have been told to do so many times. For once, I will listen, and with a bit of luck, I will prevail.

What is this website about?

Quirky, tenacious and neurologically compromised expat writing about life with multiple sclerosis.

Diagnosed 2,5 years after moving to Ireland, Willeke is engaged in advocacy efforts in support of improved disability and neurological services in Ireland, while also hoping to change people's perception about invisible illnesses like MS.

By highlighting difficult issues that come with the diagnosis of a chronic, neurodegenerative illness, she hopes her tenacity can bring dignity to people most in need of a modern, inclusive healthcare system and society, which looks after every aspect of life.

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About Willeke

Neurologically challenged by MS and personally by her will to succeed, Willeke is a disability awareness advocate seeking to improve neurological/MS services in Ireland.

By highlighting difficult issues that come with such a diagnosis, she hopes her tenacity can bring some dignity to people most in need of a modern, inclusive healthcare system that looks after every aspect of life.